Esclerodermia

You can take an active part in treating your scleroderma. In addition to keeping appointments with your doctors and physical therapists, some of the suggestions below may help alleviate some of your symptoms.

In diffuse systemic sclerosis, hand joints can stiffen because of hardened skin around the joints or inflammation within them. Other joints can also become stiff and swollen. 

• Your doctor may recommend medications to relieve joint or muscle pain.
• Physical or occupational therapists can recommend stretches and exercises to help you maintain a range of movement. They can also help you learn to do everyday activities in ways that will put less stress on tender joints.

Skin problems from scleroderma can make your skin dry and stiff. If your skin is affected, some of these ideas may help:

• Apply oil-based creams and lotions frequently, and always right after bathing.
• Apply sunscreen before you venture outdoors to protect against further damage from the sun’s rays.
• Use humidifiers to moisten the air in your home in colder winter climates. Clean humidifiers often to stop bacteria from growing in the water.
• Avoid very hot baths and showers, as hot water dries the skin.
• Avoid harsh soaps, household cleaners and caustic chemicals, if at all possible. Otherwise, be sure to wear rubber gloves when you use such products.
• Exercise regularly. Exercise, especially swimming, stimulates blood circulation to affected areas.

Scleroderma can make your mouth dry and damage connective tissues in your mouth, speeding up tooth decay and causing your teeth to become loose. Tightening facial skin can also make your mouth opening smaller and narrower, which makes it harder to care for your teeth. Here are some ways to avoid tooth and gum problems:

• Brush and floss your teeth regularly. If hand pain and stiffness make this difficult, consult your doctor or an occupational therapist about specially made toothbrush handles and devices to make flossing easier.
• Have regular dental checkups. Contact your dentist immediately if you experience mouth sores, mouth pain or loose teeth.
• If decay is a problem, ask your dentist about fluoride rinses or prescription toothpastes that remineralize and harden tooth enamel.
• Consult a physical therapist about facial exercises to help keep your mouth and face more flexible.
• Keep your mouth moist by drinking plenty of water, sucking ice chips, using sugarless gum and hard candy, and avoiding mouthwashes with alcohol. If dry mouth still bothers you, ask your doctor about a saliva substitute or medications that can stimulate the flow of saliva.

Systemic sclerosis can affect any part of the digestive system. You may experience problems such as heartburn, difficulty swallowing, feeling full when you’ve just started eating or intestinal complaints such as diarrhea, constipation and gas. If your intestines are damaged, your body may have difficulty absorbing nutrients from food. Here are some things that might help at least some of the problems you have:

• Eat small, frequent meals.
• To keep your stomach contents from backing up into your esophagus, stand or sit for at least an hour (preferably two or three hours) after eating.
• When it is time to sleep, keep the head of your bed raised using blocks.
• Avoid late-night meals, spicy or fatty foods, alcohol and caffeine, which can aggravate GI distress.
• Eat moist, soft foods, and chew them well. If you have difficulty swallowing or if your body doesn’t absorb nutrients properly, your doctor may prescribe a special diet.
• Ask your doctor about medications for problems such as diarrhea, constipation and heartburn. Some drugs called proton pump inhibitors are highly effective against heartburn. Oral antibiotics may stop bacterial overgrowth in the bowel, which can be a cause of diarrhea in some people with systemic sclerosis.

There is no cure for scleroderma, but treatment can improve your quality of life. People with diffuse scleroderma face the most serious long-term outlook if they develop severe kidney, lung, digestive or heart problems. Fortunately, less than one-third of patients with diffuse disease develop these severe problems. Early diagnosis and continual and careful monitoring are important.

Here are some more serious complications that develop for some people with scleroderma, and some of the ways that doctors typically treat them:

Lung damage: Virtually all people with systemic sclerosis have some loss of lung function. Some develop severe lung disease, which comes in two forms: pulmonary fibrosis (hardening or scarring of lung tissue because of excess collagen) and pulmonary hypertension (high blood pressure in the artery that carries blood from the heart to the lungs). Treatment for the two conditions is different:

• Pulmonary fibrosis may be treated with drugs that suppress the immune system, along with low doses of corticosteroids.
• Pulmonary hypertension may be treated with drugs that dilate the blood vessels or with newer medications that are prescribed specifically for treating pulmonary hypertension.

Regardless of your particular lung problem or its medical treatment, your role in the treatment process is essentially the same. To minimize lung complications, work closely with your medical team. Do the following:

• Watch for signs of lung disease, including fatigue, shortness of breath or difficulty breathing, and swollen feet. Report these symptoms to your doctor.
• Have your lungs closely checked, using standard lung-function tests, during the early stages of skin thickening. These tests, which can find problems at the earliest and most treatable stages, are needed because lung damage can occur even before you notice any symptoms.
• Get regular flu and pneumonia vaccines as recommended by your doctor. Contracting either illness could be dangerous for a person with lung disease.

Heart problems: Common among people with scleroderma, heart problems include scarring and weakening of the heart (cardiomyopathy), inflamed heart muscle (myocarditis), and abnormal heartbeat (arrhythmia). All of these problems can be treated. Treatment ranges from drugs to surgery and varies depending on the nature of the condition.

Kidney problems: Renal crisis is an uncommon but serious complication in patients with systemic sclerosis. Renal crisis results in severe uncontrolled high blood pressure, which can quickly lead to kidney failure. It’s very important that you take measures to identify and treat the hypertension as soon as it occurs. These are things you can do:

• Check your blood pressure regularly. You should also check it if you have any new or different symptoms such as a headache or shortness of breath. If your blood pressure is higher than usual, call your doctor right away.
• If you have kidney problems, take your prescribed medications faithfully. In the past two decades, drugs known as ACE (angiotensin-converting enzyme) inhibitors have made scleroderma-related kidney failure a less threatening problem than it used to be. But for these drugs to work, you must take them as soon as the hypertension is present.